This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!!
I’m having my first cup of coffee in almost 2 weeks. It’s weak and watered down by milk but it tastes fantastic. It tastes “normal,” and I’m completely satisfied with normal, grateful even.
I hold my cup with both hands, and I can’t help but ponder why something as simple as coffee represents such a development in my life. The tears in my eyes, pathetic. And I think back to over 15 years ago when all this started. When I began a “new normal” that was anything but, and here I am back at the beginning of this horrible journey… (my doctor says I’ve outgrown my meds and we need to start the experimentation process once again.)
I return to that one morning in my quiet dorm room when I woke up soaked in my own urine, disoriented and with a headache similar to what I imagine a hollow space being slammed by a bowling ball would feel. Just an echo of excruciating pain. My limbs were heavy like lead, as if I was having to drag my own body behind me when I moved, swimming upstream. And I was exhausted. There were slightly smeared circles of red on my pillow that looked like blood and my mouth had a sock wedged in it. But it wasn’t a sock. I needed a mirror. My jaw ached as I opened and I saw one of the most gruesome and grotesque images I’ve ever witnessed; it was my tongue, or what was left of it. Grossly swollen and blue to the point of purple. It was in shreds. Hanging from it were white chunks. Dead pieces of my tongue that I would later find were from my vicious chomping when seizing. It was so huge in my mouth and the pieces so tender, I could barely slur coherent words. Barely express my panic, my fear, my confusion- my isolation.
That was my introduction to Epilepsy. My Freshman year. Ready to discover this new world before me, and find myself. Instead, I became the most lost I’ve ever been. And that became my new normal.
Unless you were in my circle of friends, you weren’t aware this tall, athletic looking blonde was anything but normal. She smiled and laughed in class, when she was there. That just meant she was a little fond of ditching; who wasn’t? This was college. She may have had a split nose or remnants of a black eye, random bruises, but those things aren’t my business and accidents always happen. She smiled and laughed in class… when she was there.
I wanted to be there, amongst a bunch of other “young adults” talking about last night’s party, where they were going for lunch. The beach. The weekend. Who was studying where for mid-terms. I was grasping at all the things I’d busted my butt for in high school. I was reaching for normalcy. I never found it that first year.
Instead I dealt with EEGs, MRIs, angiograms, and lots of experimentation with meds. I was on Tegretol, Dilantin, Depakote, Neurontin, etc… all with side effects and/or breakthrough seizures. I experienced life-threatening rashes, massive hair loss, depression, weight gain, constant dizziness, and even Steven Johnson’s syndrome where my gums gushed blood at any sign of pressure. I was laid out on my parent’s couch sucking down apple sauce mixed with blood, losing crazy weight. (I do not recommend that diet.) Pain and more uncertainty, until I landed on Lamictal. A gift from God, even with the side effects on my eye sight and balance, it slowly gave me normalcy. A treasure we take for granted.
I’ve had breakthrough seizures over the years, usually at night and not always Tonic Clonic (Grand Mal) but we’d adjusted my Lamictal and everything would return to a few blue and yellow pills twice a day. Renewed normalcy, with occasionally interspersed auras and twitches. Not extraordinary or outstanding but functionally… normal. A gift after everything I’d been through. Fast forward to another kind of gift- pregnancy. Seizures returned, which we feared but expected. And the rollercoaster began- no license, no leaving the house alone, heavy doses of meds. The phone always at my hip.
It’s been 2 ½ years since I gave birth to a very healthy baby boy but it’s also been 2 ½ (actually almost 3 ½ including pregnancy) years since I’ve known “normalcy.” And two weeks ago, I had an episode that forced me to stop accepting my life with Epilepsy at status-quo. I can’t continue to live with frequent twitches and auras while ignoring the possibility that I’ve outgrown my Lamictal. And last night’s call from my doctor’s office; It’s time for new testing, and increasing the Lamictal just one more time likely won’t work because my body’s developed a tolerance. I’d developed a threshold for normalcy. lol My body’s decided to turn on me once again. I wanted to scream after that phone call. Tears poured down my cheeks in frustration and fear. I went to my place of solace- the shower- and cried into the water. Big heaving sobs where I could be alone and empty the build-up of anger and weight of uncertainty.
So now here I sit, looking at the bottom of my almost empty, cherished cup of coffee. I hold it with both hands and enjoy the weight of the glass, its last shred of warmth. I think about how my husband will carry it back to the sink for me and I will pour myself a glass of water into my everyday plastic cup… and I realize my topic for The Epilepsy Blog Relay is supposed to be “awareness” not the brief overview of my personal story I’ve just poured onto this page…
I guess I should’ve spouted facts like: 1 in 10 people will have a seizure in his/her lifetime or 1 in 26 people will be diagnosed with Epilepsy. Or even the fact that more people die from seizures and seizure related complications than breast cancer every year. (Wow, right?) But then I think about how my life will be anything but normal because the next few months are likely to be anything but certain, anything but routine, anything but stable. And isn’t that important considering I’m part of 3 million people living with this awful condition? Doesn’t sharing my, our, story paint for others what daily life is and may be. I have the privilege of speaking for those without a platform, and creating importance for those whose daily struggle is a thousand times more severe than my own.
I’m not claiming to be the poster child for Epilepsy but I do know the confusion, the depression, the physical beating, the emotional defeat, and the fear… the “new” normal that’s not so normal.
And I wonder- where’s the statistic quantifying that?
NEXT UP: Be sure to check out tomorrow’s post at https://theelitemomblog.wordpress.com/ for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.
It is so personal to have something written from the heart rather than throwing stats around, (which at times I am guilty of but there are times and places!), it means so much more. That was a beautiful piece.
Thank you for sharing your story. Made me want to go in the shower turn on music and cry my eyes out, but I’m at work so I can’t do that. I hope they figure out a good combination of medicine for me so I can maybe live a half way normal life. I’ve tried every medicine that was listed. I’m now taking Keppra and it’s really trying to do the job but like you said in your story about your body building a tolerance that’s what my body has done with the Keppra and rather then them increase the meds or add one here comes the roller coaster once again.. more testing.. testing and more testing mean while I get to deal with active seizures, phone to the hip, no lisence, kids scared, going to work etc.. I’ve been an epileptic now for 18 years and the hole time I’ve had active seizures with very little bit of control, along with al the side affects and everything else. Again thank you for sharing this story. I always wondered if others that were having seizures felt like I did or went threw some of the same things as I did and your story explains from a-z how my life has been for 18 years. I’m now 33 and it started when I was a sophomore in high school. Hopefully during my roller-coaster we find a solution. Best wishes to you and your future!
I am all too aware of that sock in your mouth feeling and my heart goes out to you. Congratulations on a beautiful baby! I take both Kepra and Lamictal now. I have had to change drugs too many times. Most recently it was to try and have a healthy baby. Even though it gets tough, sometimes the only thing that keeps us going is finding the good in small achievements. I know there is a drug for you! Best wishes as you begin the new drug journey! And hug that obviously beautiful family of yours!
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Thank you so much for the encouragement!! There are so many in our same situations, and I value your input, knowledge, advice, etc. I’m hoping maybe I can try the lamictal/keppra combo and see if it works… I hope too that you were able to find the right meds and start the baby process. It took us several years to get pregnant and since we checked out well on everything else, I think it might have had to do with my meds. Who knows?! But I do know Lamictal is highly recommended for pregnancy… Best wishes to you too!!! ☺️
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Sounds like we have been through some of the same feelings with our Epilepsy.
Yes, about 1 in 10 people will have some sort of Epilepsy.
Many people don’t know the stats.
All the best :)
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